Emerson’s potassium level dropped to a new low Monday night (2.1 for my medical friends) and, after much commotion and little sleep, she was transferred to the PICU Tuesday morning. Emerson remains in the PICU tonight with only mild improvement in her potassium levels (mid to upper 2 range), general electrolyte imbalances, excessive urine output, and continued dumping from her ileostomy. She is on TPN, off intestinal feeds, and is receiving electrolyte infusions/boluses around the clock. The team, with help from Emerson’s Endocrinologist, initiated a continual Vasopressin drip Thursday to help slow her urine output, thereby hoping her kidneys could retain vital electrolytes and labs would improve. Three days into the drip, now, and urine output is better… electrolyte levels, though, are not.
I have no idea what we do or where we go from here. Emerson is requiring labs every 6 hours with IV potassium boluses after each, in addition to daily boluses of calcium, magnesium, phosphorus, and albumin – and all that on top of a TPN recipe chocked full of each. She is also requiring a 24-hour IV drip to control massive urine output and prevent dehydration. She was admitted 10 days ago with increased output from her transplanted bowel. That continues, but now we are left with a problem in her transplanted kidneys that has taken over and changed the face of this admission.
No one knows what is happening or why. All tests for things that could be affecting Emerson’s bowel have returned negative, thereby leaving us with the probable diagnosis of an unknown virus. Could that same virus be attacking her kidneys too? The general consensus is that it’s unlikely, but they have so few patients who’ve received Emerson’s exact same combination of organs that I’m not sure anyone really knows.
As I sit here tonight, watching the snowfall outside, I am deeply saddened at the prospect of a lengthy admission through the holiday season. To be honest, I can’t even think about it for fear my stomach will twist into knots and my eyes will well with tears. There is so much I was looking forward to this month, and I’m trying to come to terms with the fact that I won’t be a part of the plans I put into place. Life will go on without us at home, I’m just deeply disappointed for all I will miss. Still, though, I know where I am needed most and that is exactly where I sit tonight – back in a little (this time blue) recliner at the side of Emerson’s PICU bed, comforting her and advocating on her behalf. This is not an easy life, nor one that I chose, but it is the life I live. There has been much pain and heartache, but the depth of love I have felt and the appreciation for life I have gained could never be matched.
At the end of the day, and as news that the most recent & sickest Ebola patient yet arrived at the Nebraska Medical Center this afternoon, I am reminded that we are at one of the very best hospitals in the country. And I am comforted to know that my daughter is in very good hands…
7 thoughts on “One Thing Leads to Another…”
Thinking of you and Emerson today x
In very good hands, with a mommy advocate unmatched by any other, and very truly admired for the sacrifices you have made, and the unconditional love you have for your daughter. May you find peace, comfort and lovein your little blue recliner. Love and thoughts to all of the White family. ❤ You are loved.
Thank you so much for posting. Everyday I have been wondering what was happening…. I am so sorry for the situation right now, but I know how strong both of you are. You are an amazing mom…and advocate..to all your dear children. One day…one hour at a time; there will be many other holidays. Prayers and thoughts…..
Sending prayers for Emi.
Continue to send prayers and positive thoughts your way. What a blessing you are to Eme and what a blessing she is to so many people.
Sending prayers for Emerson, as well as all those who are caring for her, and you, and your family in Colorado. I remember the chapel there in the hospital and hope perhaps it may help you to find some measure of peace and comfort. You truly are in the best of care there.
Praying for you guys. She is one tough cookie – guess she gets it from her Mom. God Bless you both!!